Chronically Ill but chronically hopeful

By Amelia Shultz

Phoenix Student Media

“She’s not really crippled.” That’s what they said.

I was standing up to open my locker. I was in a wheelchair but I could stand for short periods and walk short distances. It was after school, the hallway had cleared out except for a few boys. The boys saw me stand and said, I quote, “She’s not really crippled.” You should know, I’m a person too, I have feelings, and that hurts. The boys followed up that comment with, “I thought her legs were broken!” The boys were laughing and when I turned around they said, “You can stand!?” To which I replied, “Only for short periods.” I finished up at my locker and rolled away as quickly as possible. They may forget what they said, but I assure you, I never will.

You know that feeling where something is on the tip of your tongue, but you can't figure out what it is and that unfocused feeling. And that feeling of immense pain coming from your head, and your knee, and your chest, and everywhere. You know that feeling where your brain feels like mush and you just feel like you are floating around in a sleepy daze. You know that feeling when you spell tons of words wrong in your article when you're supposed to be The Phoenix’s Copy Desk Chief. I get those feelings all the time.

I have JRA (Juvenile Rheumatoid Arthritis), which means that when I “flare,” I get severe joint pain and swelling. This makes it hurt to walk, move, write, and even braid my own hair and take notes. I was diagnosed with JRA on the week of my second birthday, at that point, I could barely walk. I am also fructose intolerant and there is very little food I can eat. Fructose Intolerance is when your body can’t process most sugars, fruits, and vegetables, and when I eat fructose I get really bad nausea and stomach cramps. I, also, was just diagnosed with Vestibular Migraines, which is basically the reason I am dizzy and have headaches all the time. I also have Costochondritis, which is a pain in my ribs and breast bone. I think it’s connected to my Dysautonomia somehow, but luckily, unlike Dysautonomia, it’s usually short-term. And just a few months ago I was diagnosed with Dysautonomia, which is a heart condition that affects my balance, memory, and makes it very easy for me to faint, and, overall, makes my life extremely difficult. For this reason, I was in a wheelchair at the beginning of the school year. Dysautonomia (POTS) is yet another one of my illnesses that makes it hard to stand for any period of time. And POTS seems to be the one thing that connects all of my problems.

Even through all of my challenges, my friends and family are there for me. Whenever I need a shoulder to cry on or a hug, someone is there. I have a few close friends who know everything about my illnesses, and they are the best at checking in on me and listening to me in general. And my family is great at helping me with taking my meds and caring for me when I'm not doing my best, and my puppy is always there to comfort me.

I know this is a lot of information to throw at you especially when I don't look sick, or in pain, but it would be nice if you considered what might be happening on the inside of someone before saying something rude about them. I’ve had so many people tell me that I’m lying about being sick, but if I was lying about my illness: I’d choose something that people would believe. And I’m here to tell you that just because someone doesn’t look sick, doesn’t mean they aren’t; Ever heard of concealer? It is always important to never assume what someone else is going through just by their appearances. You never know what someone is going through, and that is why I wrote this article, to give some insight into how my life is and what some other people may be going through. I hope I get cured of my disease, but I still think it’s important to remember that this is what I’ve gone through, and what so many other people go through on a daily basis. At this point, my pain is a part of me, I wish I could say otherwise but it seems to be the one constant thing in my crazy life.